Blogging Against Disablism Day 2012
May 1, 2012 9:12 AM   Subscribe

"We had no idea we were creating an entirely new form of protest, a 'from bed activism' or an entirely different, radical new way of working for sick and disabled people. We had no idea because we could barely get through each day." For Blogging Against Disablism Day, "Benefit Scrounging Scum" reflects on her experiences fighting both the disability benefit cuts and how people with disabilities are portrayed.

Blogging Against Disablism Day is held each year on May 1st, a day on which disabled and temporary abled bloggers both reflect on disablism in work, online and every day life.

Some notable posts: Much more can be found on the Blogging Against Disablism Day 2012 page.
posted by MartinWisse (21 comments total) 26 users marked this as a favorite
What I think is so awesome is that people who were housebound and in previous generations would never have been able to share their thoughts/existance/needs/experiences of life with the world-- now have an outlet to let the world know what it's like- and hopefully make the right kinds of improvements.

Of course having a voice doesn't necessarily mean the world will change-- but it's something. And if people who are suffering and facing obstacles to alleviate their own conditions and they make their genuine needs known-- then it's on those have the ability to help but choose not to.

Of course each of us has to determine what ability to help means and what help itself means and how to do that- and that all takes a lot of thinking and avoiding. But all I'm saying is-- for all those who are speaking of their experience of life and want change-- in services or in societies responses to disabled/differently abled people in their own lives-- speak it. Hey if all you can do is plug away at a screen with your thumb-- you never know-- the power of your thumb could change the world.

Thanks for posting this MartinWisse.
posted by xarnop at 9:41 AM on May 1, 2012 [4 favorites]

I see melouhkia (mentioned at your link), also known as s.e. smith, post excellent stuff at TigerBeatdown all the time.
posted by emjaybee at 9:49 AM on May 1, 2012

This is the kind of dickhead these people are up against.
posted by TheAlarminglySwollenFinger at 9:54 AM on May 1, 2012

“You only see me walking short distances, and I do mean short.”

Heheh, yeah, and I need to take an extra tramadol an hour before I leave, and I still walk slower than a crawling infant.
posted by Ardiril at 10:02 AM on May 1, 2012

"This is the kind of dickhead these people are up against.
posted by TheAlarminglySwollenFinger

"Left wing hysteria now dictates that you can't even repeat what people with learning disabilities tell you if it questions their shibboleths," he tweeted.

So your policies as an MP in this area are based on comments from people with learning difficulties? What next, nursery policy designed by a 3 year old? (Actually, given the removal of some of the tax credits in this area...)
posted by marienbad at 10:30 AM on May 1, 2012

It'd be nice to have a breakdown of:

- what benefits disabled people are entitled to
- what the obstacles are to obtaining those benefits
- what laws have been passed or are proposed restricting those benefits
- what public opinion is

It's hard to tell what's going on from scattered anecdotes.
posted by desjardins at 10:44 AM on May 1, 2012 [2 favorites]

It's hard to tell what's going on from scattered anecdotes.

Particularly as the links in the FPP are all about the UK.
posted by valkyryn at 11:06 AM on May 1, 2012

marienbad: having your policies relating to people with learning disabilities be guided by those people is actually a very *good* idea. But I doubt many of those people are actually in favor of waiving their basic labor rights.
posted by spaceman_spiff at 11:09 AM on May 1, 2012 [5 favorites]

So your policies as an MP in this area are based on comments from people with learning difficulties?

That would make sense, because people living with those disabilities have a lot of specific wisdom to offer.

No, what he's saying is that he has secret information from people with intellectual disabilities, but when he's called on it because what he says is completely out of keeping with what the community of people with intellectual disabilities calls for in terms of public policy, he can't reveal his sources because of "left wing hysteria."

He's implying that his informants with intellectual disabilities know better than the community of activists with intellectual disabilities, and therefore he knows better and everyone else should just shut up and not criticize him.

It is the equivalent of white politicians and pundits in the US saying "I have a black friend who says this is OK" when they are called on some outrageous racism by black activist groups.
posted by Sidhedevil at 11:22 AM on May 1, 2012 [2 favorites]

I get disability funding because I have autism and severe depression. I would sooner work. I have spent the week looking for work. I also finished my masters degree this week. I am in this bizarre tension where to get help to work, I am about three years too old, and I am also too compotent. Literally, I am too retarded to get a s traight gig, and too straight to get a gig reserved for those who are learning disabled. No one knows what to do.
posted by PinkMoose at 12:37 PM on May 1, 2012

The Sexual Eunichs post is interesting. I used to tend bar in a rust-belt city's only gay bar much smaller than Manchester. On Friday or Saturday the pretty, pretty boys would hold court. But on a Sunday I would serve everyone else: an older crowd, the alcoholics and a few individuals who were visibly disabled. Nice chaps, most of them. It is unfortunate how we self-segregate.

Though, I do have fond memories of dancing with a boy in a wheelchair. He grabbed my hand and pulled me on to the floor. I suppose that is how you survive: you compensate for what the group views as a negative by having massive balls and pursuing what you want.
posted by munchingzombie at 12:45 PM on May 1, 2012 [1 favorite]

> We had no idea we were creating an entirely new form of protest, a 'from bed activism'

How quickly they forget!

No offense, I realize that has nothing to do with sick and disabled people, I just couldn't resist.
posted by languagehat at 1:34 PM on May 1, 2012

I wish there were a way I could hand out copies of the Assumptions about Disability blog to people without seeming like an asshole. Because I really want to. Especially to servers that ignore me. Or people who talk over my head to my friends about me when we're out shopping. Or, or, or.

Also the dis/abilism and the suddenly huggy lady blog, because, oh my god I have encountered this so much and it is awful. Yes, I am in a wheelchair! I know! Just because you think I can't feel my legs does not give you permission to pat me or touch all over them! Ugh.
posted by clavier at 1:41 PM on May 1, 2012 [2 favorites]

It's pretty bad living with a psychiatric disability in New York City.

Have you ever had to apply for Medicaid? I did, in 2000. I had to leave college and go into full-time treatment, and there was no money to pay for that treatment, so Medicaid it was.

The first day my mother and I went to the office, we were told to be there when it opened at 10 a.m. What we didn't know was that a line started to form by about 8 a.m., so there was no way we'd be seen that day.

The next day we returned, this time before 8 a.m. to be sure we were first in line.

When we got into the waiting room, there was a television playing a PSA on a loop. The PSA went like this: Two women, perhaps friends from the distant past, met on a bus.

Woman 1: How are you?
Woman 2: I'm great. I got a job!
Woman 1: Wow. How did you do that?

Now look-a-here. If you have it together enough to fill out all the forms necessary to get Medicaid, you have it together enough to know how to go about procuring a job. Not having one isn't a sign of malingering or idiocy, it's a sign of being down on your luck.

The other people in the waiting room were like me. They were sick, or they had sick kids, or they had jobs where they didn't earn enough to keep their heads above water.

We sat there for hours, watching that inane PSA over and over again. I wanted to take a hammer to the television.

My name was first on the list, but I wasn't seen until some time after noon, in spite of getting to the office a full two hours before it opened.

The social worker who met with me was disdainful. She treated me as if I was trying to take advantage of the taxpayer. When I asked her questions, she told me flat-out that it was her job to ask questions, and I wasn't to talk unless I was answering.

This all happened when I was suffering from such severe PTSD that I couldn't go outdoors without seeing my abuser's face everywhere I looked.

When I'd been at school, at a posh private university, the administration also treated me like I was trying to con them. They refused to help me with anything beyond dropping a semester full of classes. A physics professor declined to sign off on my dropping his class because, he said, I didn't look depressed. Never mind that his signature was a technicality, not meant to indicate his approval but simply to confirm that he had been informed by the dean's office that I was ill. I mean, I had letters from the university psychiatrist, and here was this asshole professor telling me I was bullshitting him.

Years passed. I had completed my treatment program and gone to work. I kept trying to get "better," to be okay, to live a normal life. I worked my ass off as a cub reporter. I won awards. I was recruited by a bigger, better paper.

But then my brain went wonky again, and it became apparent to my editors that I was really actually sick. I later learned that they had secretly started the process of firing me. One heroic editor kept putting it off and even promoted me. But as soon as she left the company, the other editors got right back on track with the firing. It was too disruptive to the newsroom to have a reporter who had to skip out at 5 p.m. once a week to see her therapist.

It took a few more jobs and a few more years before I realized I actually couldn't work. I couldn't deal with the daily stressors that were normal for most people. I couldn't handle it. I was fired twice more before I applied for disability. It was not something I wanted to do. I'd always been ambitious. Disability was not a path to a Pulitzer.

But I didn't have a choice, and so began the process of dealing with more demeaning government assholes accusing me of malingering. It hasn't stopped, to this day, though I'm clearly disabled now. I have a hard time leaving the house. I can't sleep through the night without the assistance of multiple (and pricey!) psycho-pharmaceuticals.

It's very frustrating to be unable to do all the things you want to do. To be unable to walk to the grocery store, or hop on the subway and catch a show. It's exhausting. It's exhausting to be sick all the time, and to feel there's no bend in the road.

I have been trying to access case management services for more than a year and a half. First I was referred to a drop-in center where the woman assumed I didn't know how to write my name. Then I was referred to a second drop-in center where the secretary yelled at me for not signing legibly enough in the "signature" column of a form.

The thing is, I present pretty well. I was, after all, a professional with a nice liberal arts education. And so my first day at one of the drop-in programs, everyone asked, "Are you the new social worker?"

I chatted them up. They told me they had been attending for twelve years, seven years, four years. I asked if the treatment had helped. They said there was free lunch.

Before I signed up, I called and asked specifically if they had case management services, and they said yes. I asked about it again at my intake, described the nature of my problems and asked whether the center had the resources to assist me with solving them. Yes, said the intake specialist. You'll meet with your case manager at least once a week, she said.

But when I went to my first meeting with the supposed case manager, she looked stunned and confused by the kind of assistance I needed.

"You need intensive case management," she said. "I'm a social worker, but I really only do therapy."

I'd been very clear, both on the phone and at intake, that I already had a therapist and only needed a case manager. The people I spoke to were certain they could provide what I needed.

I was looking for concrete assistance with specific problems, like filling out the forms for Access-a-Ride. Except, it turned it, the government-funded "case management" folks didn't help with that sort of thing. Nor could they help me figure out my student loan problems, or get past the snaggle of red tape I encountered whenever I tried to get my psychiatrist paid.

The drop-in center, it turned out, was nothing more than a building meant to keep an undesirable population off the streets during the day. It was warehousing. It enraged me, because the people who had been going there for years deserved so much more. And I wasn't about to become one of their number. I wasn't going to let myself be warehoused. I was lucky to have a little bit of control over that. The clients I met at the drop-in center did not have as much control as I had.

The woman who wasn't really a case manager referred me to yet another organization. The new folks lost my paperwork, failed to contact me when the paperwork did go through, and then when I finally got someone on the phone, they informed me my application was expired . They told me I'd been assigned to a case manager but didn't get my secondary paperwork in on time. (There's a three-day window.) I didn't know there was secondary paperwork. No one told me about the three-day window until after it had passed. No one contacted me through the entire process -- I had to call them, and even then it was practically impossible to get a real human being on the phone.

I've had an easier time reaching disgraced politicians.

Honestly, I can't believe that I was approved for disability in 2007 and I still don't have basic case management. At one point, an intake specialist asked, "Are you registered to vote?" I said no, because I'd moved since I last registered. She said, "Would you like to be?" I said yes, and figured maybe she'd hand me a registration form on the spot. But that didn't happen. She just moved to the next question on her list.

I don't tell people I'm disabled. What am I supposed to say? If I go to a party, people say, "So what have you been up to?" and I tell them I'm working on a book. I've been using that line for years. It's true, I am working on a book, but more importantly I'm working on my health. Only that's not good cocktail party banter.

Living with a disability, in the US, is hardly living at all. I receive a check each month that, if it were applied only to my rent, would pay almost half. My medications cost almost a quarter of my monthly stipend.

Whenever anyone talks about cutting programs that assist the poor, the disabled, the disenfranchised, I get so furious I can hardly talk. Already we do not have enough. Already we barely get by. Already we rely on family and friends, and we do so to an extent that is shameful. Embarrassing. We feel disgusting and burdensome and unwanted and unneeded. We don't just feel that we are less worthy than others -- we believe it and know it to be true. Because that is how the disabled are treated.

I'm lucky in so many ways. I can at least talk about my problems and the extent of them, whereas many others in my situation don't have the capacity to do so. I can complain. I can, to some degree, advocate for myself.

But you know, the day the Social Security Administration decided I was indeed disabled, they should have assigned me an advocate. Then and there. Anyone who needs government help also needs help figuring out what government help they need, or are eligible for.

Fuck that. The day my mother and I left our abuser, we should have been assigned an advocate. We should have been assisted through the process. There should have been a number we could call when things started to get bad in our brains. Somebody should have been there, waiting to provide the help we needed.

That didn't happen. And it's sixteen years later, and honestly? My life isn't so much better these days than it was when I was living with abuse. I'm still in constant fear. In many ways, I am still trapped. If I wanted to go to school right now, I couldn't. If my relationship took a turn for the worse, I'd be screwed, because I wouldn't have the funds to leave. It's almost like being fifteen again, thinking there is no use trying because there is no possibility of escape.
posted by brina at 2:02 PM on May 1, 2012 [25 favorites]

Almost forgot about this. Perhaps there's still time to throw together a post.
posted by wintermute2_0 at 4:15 PM on May 1, 2012

It is depressing how many of the items on clavier's Assumptions About Disability link are about the currently-abled policing whether people using wheelchairs are "disabled enough". What's with all the suspicion towards people with disabilities? Yes, there are people out there committing insurance fraud, but the probability some guy you see at the mall is such a person is vanishingly small next to the probability that's just a guy living with a visible disability.
posted by gingerest at 6:27 PM on May 1, 2012

What's with all the suspicion towards people with disabilities?

A decades long, government and rightwing media driven campaign against benefit scroungers and cheaters, where the only time you read about people with disabilities in your local paper is when somebody is caught claiming disability benefit while doing extra shifts at a building site, or being the centre forward of the local football team. This combines with an overtly black and white view of disability, where either you're crippled and incapable and a fit subject for pity, or you're obviously putting one over if you turn out to have good and bad days, so that anybody who is in a wheelchair, but can get out of it unaided is clearly a cheat and a phony.
posted by MartinWisse at 11:51 PM on May 1, 2012 [2 favorites]

A few quick points:

-Incapacity Benefit and Disability Allowance were allegedly used in the late 1980s to cover up structural unemployment in many former industrial areas of the UK.

-Historically, both programmes have been a source of truly massive fraud from individuals and private contractors alike.

-Many experts now believe that the problem with the system is that it gives far too little help, but to far too many people for too long a time period. This is true of many of the UK’s welfare benefits.

-Disability Allowance gets mixed up with Incapacity Benefit, though the latter is far more open to abuse.

-The UK's welfare state has gone so far from the Social Insurance, help to get back on your feet, looking after the elderly, sick, injured etc principles of Beveridge into a money and soul munching behemoth that even the poorest in the UK no longer support in its current form. There are many reasons for this, from a shift towards extreme means testing for Council Housing and other benefits, to the loosening of the definitions of disability to mask mass unemployment.

-This collapse of support is not because of the scatological odium of the Mail and Express, but because it is, and appears to be, viscerally unfair and wasteful to those with real life experience in and around it. If you need it, you often can’t get much of it – because its already been taken.

-Anyone supporting a social safety net and a just society needs to be careful what campaigns against UK welfare reform they support. An infinite blank cheque to all from all is not credible.

-If the Left continue to stand in the way of change, screaming blue murder at any reduction in outlay or restriction of availability, the Mail will win. The poor and needy and young and unlucky will then suffer far, far more than they can imagine. It is hard for many voters to understand the problem with a £26,000 cap on benefits going to an able bodied family, for example, when this represents far more real income than most any job around them will pay. Watch out on this issue people, the bleeding hearts may drown us all I fear...
posted by The Salaryman at 4:36 AM on May 2, 2012

The first two points is what they said about disability benefits in the Netherlands as well, when they "had to be reformed" in the late nineties; wasn't quite as true as you make them out to be, especially not the idea that it's been "a source of truly massive fraud from individuals and private contractors alike". IIRC recent studies in the UK showed something like less than 3 percent of applications were fraudulent.

The rest is just bog standard rightwing cant, from the idea that people in need are driven out by scroungers to the delusion that the left has to be careful about not opposing welfare reforms or "the Mail will win".
posted by MartinWisse at 4:53 AM on May 2, 2012

Ronseal right there. And "cant" assumes hypocrisy, moralistic finger wagging and lack of critical analysis amongst other things. I can't prove it, but sure don't feel I've got it. I'm not sure there is a word for the allergy of an ideologue to evidence or any challenge of Doctrine. Maybe Spartist Tea Partier Kamikaze Killer Klown or something. Or else just vote and public argument Loser in the deepest sense. Keep up the fight, boys. See you outside the Student Union.
posted by The Salaryman at 5:06 AM on May 2, 2012

The standard arguments brought out to sell welfare cuts, especially for sensitive benefits like disability allowances, where the pity factor plays a role (no matter who started the fight; if you beat up somebody in a wheelchair, you always look like the bad guy) are always the following:

1) It's too expensive and we (you) need to make sacrifices because of the economy
2) there is too much abuse and we need to make sure only the people who really need it, get it.
3) We must make sure people are no longer dependent but can stand on their own two feet and it's better to have any kind of job than to live on welfare
4) We can't explain to the decent hardworking British families that these people get all that money and free housing when they have to scrabble to make a living

Not mentioned:

1) There are people better placed to make sacrifices that would hurt them less to pay for this (e.g. not lowering the top rate of taxes as Osborne just did would pay for an awful lot of benefits)
2) Abuse is actually minimal and stricter controls means bigger costs in combatting this abuse than it gains in minimising it, while denying more access to people unfairly (especially in programmes where the prospective (ugh) clients are not necessarily at the peak of their mental capacities to be able to work their way through the bureaucracy that invariably springs up)
3) It's not possible to force people into jobs that aren't there, or they can't hold anyway (or, as one minister here in *.nl once seriously suggested: in a wheelchair with MS? Why not fold eggrolls for a living? Even if one such a person could do this, obviously that's not a solution for all of them)
4) Actually, the honestdecenthardworkingbritishfamilies do understand the need for a decent welfare state, when they're not actively being lied to.

Also, if your argument seriously is that people on benefits are better off than people who have a "proper job" and that's why we need to cut benefits, you're solving the wrong problem.
posted by MartinWisse at 5:21 AM on May 2, 2012 [1 favorite]

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